If my mailbox can be believed, there are a whole lot of parents in the Church who are coping with autism and similar disorders. There doesn't seem to be just one way to care for autistic children — which is a good thing, because although many of them seem to exhibit similar behaviors, no two children (with or without autism) are exactly alike.

We have a new batch of letters today, and enough others for at least a couple more weeks. Judging by the comments I've heard and the letters I've received, this is a topic that needs a lot of attention.

I have tried to write to you, several times, about the letter from Joney Haff's daughter in Orlando, Florida .  I even tried not to write to you about this letter, but I have some feelings on this subject.  You see, we are in the same situation as her daughter!  I am very interested in the responses you get to this article!   I have total empathy for this family and others like us!    

It is completely overwhelming just trying to parent these children.   We, as parents, are worn out with exhaustion by the end of each day.   

It is hard to hold any calling with these children, especially both parents with Sunday callings.  For the past seven years, I have not been able to sit through an entire Relief Society meeting.  I am either sitting there with ears peeled for our daughter's scream or someone calling me out of class because she is out of control.  

I have even tried to substitute for our child's class and it has been a disaster, because I am trying to give the lesson at the same time I am trying to watch for clues to the meltdown that is about to occur, or that has already started occurring.  My husband and I try to support each other's callings, and find it extremely difficult for both of us to have Sunday callings, because one of us usually has to be available for inevitable meltdowns.  

There have been times when either my husband or I stayed home from church because it wasn't worth the effort of getting our child/children ready for church, let alone make it through three hours of church. 

I have, personally, started to quit thinking about going to church as a means of learning something or even contributing to a discussion in a class.  If I make it into a class, I am usually called out in the middle of the discussion or hear my child screaming in the hall, and need to leave.  I am usually trying to just survive the three hours and then get home, exhausted, and try to get back to some normalcy for the rest of the evening!

Autistic children are highly sensitive to noise. If something is disturbing to us, it is 20 times worse for these kids!

They do well with structure and consistency.  They have a difficult time with change of any kind (switching from one activity to another, substitute teacher, children changing seats in classroom). They can't sit still for five minutes, let alone 30 minutes or more, in class. After all that, they then go to opening exercises, where there is usually confusion and noise that sets them off.  

They have a hard time with groups of people/children.  They need one-on-one attention.

Worrying about the safety of these children is another issue that we have dealt with. Sometimes they are wanderers; sometimes they dart out of the classroom or opening exercises.   Our child's psychiatrist has told me that I am my child's "external brain" until hers develops ( if it does).   (I think of myself as my child's Jiminy Cricket).   People like my daughter need close supervision, but I have found my child wandering the halls, running out the doors, or sitting in the cultural hall by herself.

I have only mentioned a couple of situations that we deal with in church — let alone home, school, stores, and other public places.  

I would like to offer a few suggestions for ward members, family members, extended family members, and friends.   (These suggestions are things that I have learned through experience.)

1. Do not judge these families.  They are trying to deal with their children the best that they know how! 

2. Get to know these families.  Relief Society sisters, priesthood holders, and Primary/YM/YW leaders, try to put yourselves in their shoes. Knowledge brings understanding.

3. Learn what you can about the family and the disabilities they are dealing with. There is information available on the internet, in books, and in other places. The Church website is a great start! www.disabilities.lds.org. Understand that the parents are learning, too.   This is a lifelong process.   It seems like the more we learn, the more there is to learn. 

4. Understand when the family members don't feel like it would be a good idea to attend a certain meeting, or activity.   They usually want to attend, but it is inevitable that a meltdown will, and sometimes it is just easier to avoid certain situations.

5. If these children can and do sit through a class, make sure that that they are handed over afterwards to a family member who is responsible. Do not let them go out into the hallway when the other children leave the classroom.  This may mean that the teacher holds the child's hand (if the child is willing to be touched), or follows the child to make sure he doesn't get lost on the way to the parent.

6. Avoid competitive activities (boys against girls, class against class, person against person) unless you want to deal with a meltdown.

7. Take an occasional meal to the family, loaf of bread or plate of cookies. You don't need to explain ? "just because." 

8. Try to understand that talking on the phone is very difficult when the parent has to keep an eye on the child. Even visiting is hard to do, unless there is someone else available to watch the child.  (As soon as the parent takes attention off the child, that is usually the moment the child "decides" he is hungry, that he wants to play with the neighbor's dog, or do something else that will recapture the parent's attention).  

9. Try to understand when the parents say no to a calling. (It's not because they don't want to do their part; they usually have a good reason for not accepting it.)  I have struggled with every calling I have had since adopting these children. I am now the librarian; the library is close to my child's class, so that I can listen for screaming and such, and is just down the hall from the Primary room.   (Our child very rarely makes it through those 2 hours without at least one interruption of her class or running to the library to find mom or to escape from being overstimulated.)

10. Do not assume that just because so-and-so can cope and they have a child with "such- and-such" that everyone else should be able to do it too. Do not compare one family or person with anyone.

11. Teachers, presidency, and others ? get to know the child. Love the child for who he is. Remember that the lesson being taught may not be the most important part of the class. The children are far more important than the lesson is. If it takes adjusting your way of teaching to get the message across, do it. Ask for an assistant to be in the classroom with the child, and have that assistant get to know the child. Don't assume that just because there is a body in the room, or even sitting next to the child, that the situation is taken care of. Teachers and assistants need to learn what helps and doesn't help. They need to learn what to do in certain situations. Get to know the parents and see if they have suggestions. Make a point of knowing where the parents are at all times.

12. Love the family. Let charity guide you.

13. Pray for the family, and ask for insights that will help you help the family in question.  

Love, prayer, and understanding are what these families need more than anything.  We are learning, too. 

Here are a few things that we have learned recently:

1. It is essential that the parents take care of themselves (spiritually, physically, and emotionally. Who will take care of your children in the event that you become ill, have an accident, or die? In addition, you need to have something in your cup in order to share with or give to others.

2. All you can do is the best you can do with the knowledge that you have at the time. We all make mistakes and will continue to do so. It is what we do after realizing that we've made a mistake that makes the difference in the long run.

3. It is okay to say no when you feel you need to, and you don't always have to explain. Only you know your situation.

4. It is okay to ask for help when you need it ? even if it is just asking someone to run to the store for you, or pick up something for you while you are there.  

5. Remember that our purpose is not to fix the disabilities. Instead, we are to learn to help our children survive this crazy world and become the best people they can be. (That may be very different from what we think they should be!) Our goal is to help them become as independent as they can become. Don't do everything for them; teach them to do what they can when they can with the abilities they do have.

6. Remember that Heavenly Father loves you and that he understands your situation. He is there to listen to us cry. He is there to listen to us cheer for the tiny moments of success. He is there to put his arm around you when you feel like you are falling apart at the seams and are so exhausted that you fall into bed.

7. We need to remember to not only adjust our expectations for our children (what does it mean for them to succeed?), but we also need to adjust our expectations for ourselves. We should not expect to accomplish more than we can humanly accomplish. We need to lower our expectations of what success means for us as well as for our children.

8. It is okay to mourn or grieve the loss of the child we had hoped for, but do not dwell on that aspect of this child. Get to know and find joy in who your child really is.

9. Prayer is essential!

10. Love is essential. You need to love your child, your family, and you.

11. Remember that these are not our children!  They are Heavenly Father's children and he has entrusted us with their care.

12. Remember that " the Lord giveth no commandments unto the children of men save he shall prepare the way for them to accomplish the thing which he commandeth them."  (1 Nephi 3:7)  Several other scriptures come to mind:  Lean not unto thine own understanding, Trust in the Lord.   He will not give us more than we can handle. 

Last but not least, on the LDS Church 's website  www.lds.org, there is also a reference to www.disabilities.lds.org:

Cindy from Utah

Cindy, your letter is going to help a lot! You have given many specific suggestions that will help Primary teachers and other church workers serve autistic children and their families. Some of the things were familiar to me because of research I've done on the subject, but others (such as avoiding competition in any form) were new to me.

This is such a complex topic that there is always something new to learn. Thanks for helping us understand just a little better what it's like to be in your shoes.

As a mother of two boys in the autistic spectrum and the first counselor in our Primary, I am appalled at the idea that no one in the ward is willing to help your grandchildren, especially when there is plenty of counsel out there from the Church about helping those with disabilities.  My younger son is high-functioning autistic, but for some reason church always was tougher than school until we figured out how to help along with our Primary presidency. 

We asked that first off, the Primary teacher for his class was someone who was very reliable.  For many autistic kids, consistency is vital.  We discovered that if he had someone who was there every week like his regular schoolteacher, that helped a bunch. 

Secondly, we had someone called as an aide for him.  This person went to class with him and helped him cope with the other children.  If he needed a time out, like going outside or walking the halls, she would go out with him.  That way he was never on his own and Mom and Dad were able to attend class and fulfill their callings. 

We were blessed with a sister who was used to autistic children, and she went above and beyond her calling by bringing little things to keep him entertained while remaining in class so that he became used to it.  Singing and sharing time were tough, but became better when he knew what the schedule was going to be and was able to participate.  We still had bad weeks, but with consistency and sisters willing to give of their time, he now looks forward to Primary. 

I would definitely suggest suggesting that your daughter speaks to the Primary president and the bishop to let them know of their struggles and ask if any of these suggestions might be implemented in order to help not only your grandson, but also your daughter and son-in-law. 

Katie Sage
Leesburg, Florida

Thanks for your letter, Katie. I suspect that in most wards where help is not provided, the problem is a lack of education rather than an unwillingness to help. Talking to the Primary president and the bishop should be the first step. Thanks for your suggestions.

In my last ward, there was a family with two mildly autistic young boys.  The call went out for volunteers to be trained by a nurse to handle them.  This gave the parents a standing list of helpers / babysitters who were willing to help out on Friday night / date night, during Primary or RS activity or just on an overwhelming day.

I know that the job of Primary president can be an overwhelming calling on the best of days, but I think a simple lesson for the other children would help them understand the whys and wherefores of the autistic kids.  The children will have a chance to learn, to accept and to serve their fellow Primary children.  Perhaps, if the situation allows, ask one child or another to guide and be responsible for the autistic child — or at least help an adult with the responsibility.

If there is still resistance by the ward members to help, perhaps it could be a calling by the bishop.  Several people of all ages could be assigned to help one day a month.

This is a wonderful to teach acceptance and service in a very intimate way.

Jennifer Kurt
Santa Clarita California Stake

What a good idea, Jennifer, to have a staff of volunteers who are trained by a professional! In this case, “professional” could even be the parents of the children in question, who know their own children best of all.

Enlisting the help of other Primary children may be an excellent idea, too. Young children are generally more open to new situations and ideas than older people are, and many of them would be more than willing (and able!) to pitch in.

This is regarding the autism letter by Joney Haff.  I have a son with a somewhat similar disability called “sensory integration dysfunction,” but his actions as a younger child were similar to how she explained her daughter's child to be. 

I spent many church afternoons out in the hallway calming a child with extreme separation anxiety and dealing with parents who would walk by and make rude comments about the child screaming in class.  I actually confronted a person in the hallway for making comments once and felt bad afterwards for being confrontational in the church.  However, this is a problem faced by many with children suffering from disabilities. 

If the goal of the ward is to be a family unit, then each member should have a responsibility in raising these special children.  As parents we are often so overwhelmed and frustrated with the lack of support from church members that it is easy to not want to go at all.  If not going to church is easier than dealing with the lack of insight that others have, then something is wrong. 

Luckily for us, we had a Primary leader who had dealt with the issue of having a child with autism at church.  Through her struggles and the right leaders we were able to get through some of the difficulties that Joney Haff's daughter is not.  One suggestion is to call special aides to be with the child throughout the second and third hour block so to give parents a break — but in our case we asked to be called to Primary so to make the situation easier on our son and the other children and leaders. 

I also found it very enlightening to talk as much as possible about my son and our struggles to church members and leadership.  I found that there were many misconceptions, especially because our children look so normal.  At least that is what I heard a lot of — "Oh, but I just thought he was not disciplined well because he looks so normal."  Although this statement might sound offensive, I can kind of understand where they are coming from since my child has no outward characteristics that might help someone to know that he has a disability. 

The most important thing of all is to understand as a ward that judging others is wrong no matter what the judgment is.  Not getting involved means not pulling together as a ward — and isn't service the most important thing we can extend as a ward family to others?

Shannon Birman
Gilbert, Arizona

Thanks for pointing out, Shannon, that a lot of time when we make snap judgments we don't know what we're talking about. We human beings as a group can be amazingly tactless. Sometimes I am shocked by what comes out of my mouth. (So are the people around me, no doubt.)

Just as we can say things that hurt, we can also say things that bring people closer together. If we can all concentrate on doing that instead of jumping to conclusions, the world will be a better place.

Here's a letter in favor of giving parents of autistic children a break on Sundays:

These parents need a break, and maybe Sunday is the only time.  I sure hope people in their ward can see this and have the Christlike attitude of service to them. 

Our ward has a wonderful plan in place for the autistic children that are in our ward.  I will admit that we are a large, very active ward and therefore has resources that I recognize are not available everywhere, but here is what we do. 

We have three teachers assigned to the Primary class that just happens to have two autistic boys and one extremely active ADHD boy.  Each week one teacher teaches the lesson, the second one keeps order in the classroom, and the third one is available to remove a child to walk the halls when necessary.  (Some weeks it is one child and some weeks another.) No one has the burden of every week, and often the child just needs a break and can be taken back into the classroom soon enough.

What I have observed the most in this situation is the compassion and willingness of those called to do whatever it takes to have a successful classroom but still show the love to these individual children.  Parents of these children can enjoy serving in their own callings or hearing the messages in the lessons that could very well be the thing that uplifts them to get through another week.  Not only that, but it is our priesthood brethren that are the most successful with this arrangement!

Patty
Gilbert, Arizona

Thanks for letting us know of a ward that's made it work, Patty.

Readers, I hope you see we have two letters in a row from Gilbert, Arizona. Clearly the people in Gilbert are doing something right.

Speaking of Arizona, here's a letter from a bishop in the same state. Maybe he's from Gilbert, too — he doesn't give a location:

Check out this website for help on autism at church: http://disabilities.lds.org/disabilities/eng/disability-list/autism. Get the bishop and Primary president to read and understand.

However, it helps to have understanding leadership. We have two families in our ward that have some autistic children and a couple with Down Syndrome. Symptoms range from mild to severe, non-verbal, non-functioning. Sacrament meetings can be quite an interesting adventure at times.

Even though we have some who think the parents can do more to control their “misbehaving” children, I've heard many times from the parents that our ward is very accepting of them and their children and that this has definitely not been the case in some other wards they have been in. It's hard to know how to respond.

We have assigned a “teacher” in Primary to each child with these problems to spend one-on-one time with them throughout the second two hours of the Sunday block. If they can be in class with the other children (the goal), then they do. If they cannot, then they spend time in the halls or out on the lawn.

The leaders of the ward — from the bishop to the Primary president to Young Men and Young Women leaders — all have to be “on board” and show love, compassion and mercy to the parents as well as the children. Sometimes we do better than other times. Sometimes worse.

I hope that the author can get some help in dealing with the issues that autism brings.

A bishop in Arizona

Thanks for writing, Bishop. Your letter underscores that taking care of children in need is the whole ward's responsibility. If ward leaders take children under their wings, the rest of the ward will follow. The power of example cannot be underestimated.

Everything that the grandmother mentioned about her autistic grandchildren, I had to deal with.  My autistic daughter couldn't sit through meetings or go to Wal-mart without meltdowns.  I also had onlookers tell me I just needed to spank my daughter to make her behave. 

I carried a copy of the doctor's diagnosis in my purse for years — just in case anyone got overly concerned when I had to carry a screaming, flailing, raging, irrational child out to the parking lot.

In our ward, our Primary assigned a teacher to my autistic daughter to be her one-on-one helper.  She went to class with her, and if it got too difficult for her, someone would come and get me.  Sometimes this helper was a young college student or a mom with older children.  It worked for us.

However, when she was younger I spent years in the hallways, walking around the building with her at church because she could not be quiet or sit still in meetings.  I would listen to conference talks at home so I had some spiritual input for the week.

The good news for me is that after six plus years of neurodevelopmental intervention, my daughter is now no longer autistic.  (Here is a link to a Meridian article I wrote, telling her story. I would be happy to talk to the mother or anyone else personally who wants to email me at dgiroux "at" sbcglobal.net to tell what I did to help my daughter and to offer support/advice/hope.

Autism really is a growing problem in society, and there are going to be more and more kids on the autism spectrum in wards as time goes on.  I think kids with Asperger's have a difficult time as well because they can look normal most of the time and their sensory dysfunction can look like "bratty kid" or "bad parenting," which makes for difficult church interactions.

But the range of children on the autism spectrum is vast, and some kids probably do need their own teachers and other helps.  We have a Primary kid who is autistic (age 8) now in my ward, and it is physically difficult to substitute teach him.  If I take his arm to guide him to a chair, he might lurch or pull back, hurting my back, and recently he's been pinching everyone — very roughly.  I assume the regular teachers feel as if they are performing hazard duty.  The other children are at some level of risk from him.

My sense is that most people don't know what to do to help. They feel inadequate, and the problem looks so big that they shy away from it.  Over the years I told different ward members about autism and people either understood or they didn't — I could see their eyes glaze over when they had reached their emotional or intellectual input limit.  Then they would avoid me and smile a distant smile as if to say, "I'm glad that's your problem and not mine."

Fortunately most people wanted to help and were willing to learn.  As a parent I had to educate the people around me, so they would know how to help.  Also, I found that parents who had already experienced some pain in their own lives — either from poor health or difficult parenting issues seemed to be more receptive to learn.  So I would advise parents of autistic children to speak up. Tell people how they can help you.  If you manage to struggle through and don't speak up, many people will assume that you are doing fine and don't need help.

But ultimately, the parents are responsible for their children.  Some individuals and wards are going to rise to the occasion and be Christlike, helping their neighbors, and some won't.  And some of the people that look as if they could or should help are dealing with their own trials that might not be as noticeable as our autistic children.  Maybe they are doing all they can.

Pray for help.  Pray for wisdom and guidance.  Pray for strength.  Pray for charitable visiting teachers, leaders, and others.  The Lord loves us and our autistic children and he has the answer.

Beverly Giroux

Thanks for writing, Beverly ! And thanks for reminding us again that not all who want to help are able to do so.

My goodness, things don't seem to have changed very much since our nearly-24-year-old was the nightmare at church, school, in public and at home.  In observing other families with autistic children, whether severe or mild autism, who are younger, I had hoped that the new early intervention would help all around.

Yes, we heard it all:

• "You are just riding that boy too much; you need to let him be himself."
• "You are just too lenient with that boy; you need to be tougher." 
• "If he were in my family, he would turn out much better." 
• "Special-needs children are so sweet; you must enjoy him so much." 
• "He must have been a great spirit before this life to not need the ‘normal' experiences of
  life." 
• "He can't go on field trips or to activities unless you accompany him." 
• "Why don't you medicate him?" 
• "Don't you wish you had had an abortion?  After all, you already had a big family!" 
• "No, we can't adapt the program."

We were told that the Utah Autism Society had cards that read "you have just observed an incident with an autistic child," to be handed out in public when people stared or reacted in less than empathetic ways.  We decided that this was a great idea.

At church, especially as our son entered the YM stage, we tried to have informative "firesides" with the other teens and of course the leaders.  Did it help?  Not really; he was just regarded as weird, unlikable, and a pariah.

One time he invited his whole quorum to our home for games and treats. About two hours late, one boy showed up for about five minutes.  How do you answer the questions accompanied by sobs and a tear-stained face?

There were times when one of us parents stayed home with him because it was obvious that we were headed for disaster.  We would put on church music and sit together until the stress of the morning wore off and he fell asleep.

I wish I had more positive words, but at this point our son is totally inactive, unable to participate socially for more than 30 minutes unless he plays video games with others, equally outside of society.   Perhaps other parents will have better experiences with group home settings and publicly available programs.  For us, none seemed to fit. 

So now our son, our sweet baby boy, our snuggler,  lives in a one-bedroom apartment under less than ideal circumstances, but with public assistance (SSI, food stamps, housing assistance) and we try to be on his side by helping him maneuver everyday tasks that he cannot master.  We are his court-appointed legal guardians. 

He was so anxious to get a job and earn "his own money" and has been fired three times after just a few weeks at work.  And he is considered high-functioning!

Here are my promising observations:

• I have seen Primary leaders call one teacher especially for one autistic child. 
• I have seen teenagers go to the home and take the child for a walk, so parents and siblings could take a little break. 

All I can say is that these children present opportunities for charity and service every minute of the day.  Whether we are willing to take them is perhaps the most burning question in our wards and neighborhoods. 

Didn't Christ say that it wasn't the healthy who needed a doctor, but the sick?  Didn't he invite them all to him?  Haven't we been told that the church "is not a retirement place for perfect people but a place for imperfect people to grow" (Elder Maxwell, I believe)?

The small autistic children may just seem odd, but they also feel on the outside, just as the older autistic teens and adults do.  How I wish I had the answers!  But Heavenly Father does and we will meet some day with all of us in bodies (and brains are included!) without disease. 

I have no fear for my son's eternal destiny — just a deep heartache for his earthly experience!

Christa Bradford
Lindon, Utah

What a powerful letter, Christa! It gives such a strong message of how much good we can do in the life of a person — or how much bad we can do by insensitivity or inattention. Your letter is going to stick with me (and undoubtedly with many others) for a long time.

Readers, we'll have more next week.

Until then — Kathy

“If a child cannot learn in the way we teach,
We must teach in a way the child can learn.”

Dr. O. Ivar Lovaas